K\0. ' 5 c: \o l CAREGIVERS' APPRAISAL OF ALZHEIMER'S DISEASE SYMPTOMS AND THE RELATIONSHIP TO DECISIONS ABOUT CARE DISSERTATION Presented to the Graduate Council of the University of North Texas in Partial Fulfillment of the Requirements For the Degree of DOCTOR OF PHILOSOPHY By Phyllis L. Jones, B.S., M.S, Denton, Texas May, 1994
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K\0. ' 5c:\o l
CAREGIVERS' APPRAISAL OF ALZHEIMER'S DISEASE SYMPTOMS
AND THE RELATIONSHIP TO DECISIONS
ABOUT CARE
DISSERTATION
Presented to the Graduate Council of the
University of North Texas in Partial
Fulfillment of the Requirements
For the Degree of
DOCTOR OF PHILOSOPHY
By
Phyllis L. Jones, B.S., M.S,
Denton, Texas
May, 1994
K\0. ' 5c:\o l
CAREGIVERS' APPRAISAL OF ALZHEIMER'S DISEASE SYMPTOMS
AND THE RELATIONSHIP TO DECISIONS
ABOUT CARE
DISSERTATION
Presented to the Graduate Council of the
University of North Texas in Partial
Fulfillment of the Requirements
For the Degree of
DOCTOR OF PHILOSOPHY
By
Phyllis L. Jones, B.S., M.S,
Denton, Texas
May, 1994
Jones, Phyllis L., Caregivers' Appraisal of
Alzheimer/s Disease Symptoms and the Relationship to
Decisions about Care. Doctor of Philosophy (Counseling
Psychology), May, 1994, 248 pp., 20 tables, 2 illustrations,
w references, 186 titles. *
The purpose of the present study was to compare 42
community-dwelling spouse and child Alzheimer's Disease
caregivers with 38 community-dwelling potential caregivers
on salience of illness symptoms, and accuracy of judging
symptoms of illnesses. Participants were initially measured
on a variety of personality and knowledge instruments.
Participants then read four case studies that depicted four
different older females who were experiencing difficulties
characteristic of Alzheimer's disease, toxic reaction to
drugs or medication, depression, and normal aging,
respectively. Participants rated specific behavioral,
cognitive and affective symptoms on a Likert-type scale as
to the pertinence to the particular case study that was
read. Participants also made ratings for each case study as
to the appropriateness of specific outcomes, such as home
care, institutionalization, services for initial diagnosis
and services for home care. Finally, participants rated the
extent to which each of four diagnoses pertained to the case
study that was read. These diagnoses included Alzheimer's
disease, toxic reaction to drugs or medication, depression,
and normal aging.
No differences were found between the active and
potential caregivers for symptom salience or symptom
accuracy. However, female active caregivers rated
behavioral and cognitive symptoms as more salient than did
female potential caregivers. Also, male spouse active
caregivers were more accurate in rating cognitive symptoms
than were male child active caregivers, with the effects
particular to the depression case study.
Overall, differences were found among case studies, for
both symptom salience and accuracy of ratings. In general,
participants were most accurate with respect to judging
symptoms for the Alzheimer's case study for behavioral,
cognitive and affective types of symptoms. Participants
tended to be least accurate in judging symptoms with respect
to the depression and normal aging case studies.
Increased symptom salience, as well as decreased
accuracy of judgements were found to be related to increased
Filial Anxiety, Expressive Support, self-rated health
problems, Health Locus of Control (chance), use of Problem-
focused coping, and effectiveness of Emotion-focused coping.
ACKNOWLEDGMENTS
I am very thankful to Dr. Bert Hayslip for his
unwavering support and encouragement throughout the duration
of this project.
Also, I greatly appreciate the cooperation from the
Dallas and Fort Worth Chapters of the Alzheimer's
Association in locating Caregivers for this project.
Many thanks go to family and friends for ongoing
support during the last stages of preparing the
dissertation.
111
TABLE OF CONTENTS
Page
ACKNOWLEDGEMENTS iii
LIST OF TABLES v
LIST OF ILLUSTRATIONS vii
Chapter
I. INTRODUCTION 1
Alzheimer's Disease Caregiving and Stress: Issues with Burden Objective and Subjective Burden and Appraisal Burden and Utilization of Resources Social Support Kinship and Gender and Caregiving Impact Burden and Coping Issues The Appraisal Process and Health Care Decisions Impact of Stereotypes on the Appraisal Process Anticipation of the Caregiving Role Knowledge of Alzheimer's Disease Personality and Caregiver Appraisal
II. METHOD 53
Subj ects Materials Procedure
III. RESULTS 76
IV. DISCUSSION 100
APPENDICES 186
REFERENCES 232
IV
LIST OF TABLES
Table Page
E-l. Correlations between Covariate and Dependent Measures 208
E-2. Means and Standard Deviations for Symptom Salience Dependent Measures 210
E-3. Means and Standard Deviations for Accuracy Score Dependent Measures 211
E-4. Findings for Symptom Salience Dependent Measures for the Main Effect of Case Study... 212
E-5. Findings for Dependent Measures for the Care by Kinship by Gender by Case interaction 213
E-6. Findings for the Accuracy Score Dependent Measures for the Main Effect for Case Study.. 214
E-7. Multiple Regression Analysis of Behavioral, Cognitive, and Affective Accuracy Scores for the Alzheimer's Disease Case Study 215
E-8. Multiple Regression Analysis of Behavioral, Cognitive, and Affective Accuracy Scores for the Drug Toxicity Case Study.... 216
E-9. Multiple Regression Analysis of Behavioral, Cognitive, and Affective Accuracy Scores for the Depression Case Study 217
E-10. Multiple Regression Analysis of Behavioral, Cognitive, and Affective Accuracy Scores for the Normal Aging Case Study 218
E-ll. Multiple Regression Analysis of Behavioral, Cognitive, and Affective Symptom Salience for the Alzheimer's Case Study 219
E-12. Multiple Regression Analysis of Behavioral, Cognitive, and Affective Symptom Salience for the Drug Toxicity Case Study 220
LIST OF TABLES—Continued
E-13. Multiple Regression Analysis of Behavioral, Cognitive, and Affective Symptom Salience for the Depression Case Study 221
E-14. Multiple Regression Analysis of Behavioral, Cognitive, and Affective Symptom Salience for the Normal Aging Case Study 222
E-15. Findings for Dependent Measures from Regression Analyses for Active Caregivers 223
E-16. Findings for Dependent Measures from Regression Analyses for Potential Caregivers 224
E-17. Means and Standard Deviations for Outcome Dependent Measures 225
E-18. T - Values Between Case Studies for Diagnoses Dependent Measures 226
E-19. Multiple Regression Analysis with Diagnosis as Dependent Measure 227
E-20. Correlations Between Formal Service Use, Help from Others, and Dependent Variables for the Caregiver Group 228
VI
LIST OF ILLUSTRATIONS
Figure Page
F-l. Care by Kinship by Gender by Case Interaction: Cognitive Accuracy Scores for the Depression Case Study 230
F-2. Care by Gender by Case Interaction: Seek Professional Services for Home Care 231
VII
CHAPTER I
INTRODUCTION
Alzheimer's disease (AD), and related types of
disorders, are currently recognized as a major public health
problem in the United States. More than 1.5 million older
adults suffer from symptoms severe enough to require
continual care, and the number of "severely demented" older
adults has been predicted to increase 60% by the year 2000
(Light & Lubes, 1989). The impact of AD on the patient,
families and health care system has been severe.
During the past several years, an increasing number of
investigators have examined problems associated with the
caregiving role, such as depression, changes in health
status, and other negative psychological, social, and health
consequences for caregivers (Haley, Levine, Brown,
affect, when compared to Active Caregivers. This finding is
expected, based on studies (Hooker et al., 1992) that
demonstrated less positive affect with respect to
caregivers. The affect measured in this scale looks at more
transient emotional experiences, rather than more enduring
components of mood, and does appear to capture the impact of
caregiving on increasing the negativity of mood due to
fluctuations in frustration related to caregiving.
MANOVA with Outcomes as Dependent Variables
Care by kinship interaction. The finding that Children
endorsed the outcome "Home Care" more than did Spouses is
not generally supported in the literature. Studies reviewed
(Cohen et al., 1993; Colerick & George, 1986; Pruchno &
Potashnik, 1990; Smallegan, 1985) reported that Spouses tend
to maintain their partner at home longer, while Children are
more likely to institutionalize the care receiver. Spouses
155
tend to view caregiving as a normative event, and may
continue with home care, despite increased problems with
health and strain (Pollitt et al., 1989). The spouses in
this study were significantly older than the children, and
it is possible that this group evaluated their resources as
not adequate to maintain the family member in home care.
Given that the number of males included in this study was
small, predominantly females were included as Children and
Spouses, and these results may reflect this difference in
sample size between males and females.
Other studies have looked at the current satisfaction
with a relationship, and found that if a current
relationship is perceived to be positive, individuals are
more likely to entertain the idea of caring for an impaired
relative (Wolfson et al., 1993). Thus, differences in
current satisfaction with parent/child or spouse
relationships may have impacted the outcome decisions, such
that Children in this study were more likely to endorse
"Home Care" as an option.
Most studies reviewed that examined predictors of
institutionalization found children more likely to make this
decision (Colerick & George, 1986; Cohen et al., 1993;
McFall & Miller, 1992; Pruchno & Resch, 1990). However,
Children do tend to perceive parent care as normative event
(Brody, 1985), and today adult children actually do provide
difficult care over longer periods of time to aging parents.
156
However, Brody (1985) emphasized that caregiving for parents
is very stressful, and that although children may be more
willing to institutionalize a parent, compared with spouses,
children experience considerable guilt over such decisions
and do tend to try cope with the competing demands of
caregiving for families and older parents. The finding that
Males endorsed the outcome "Institutionalization" more than
did Females has not generally received support in the
literature reviewed. In fact, several authors (Colerick &
George, 1986; Pruchno & Potashnik, 1990) described those
most likely to institutionalize the care receiver as females
who were employed, experiencing high levels of stress, and
were children rather than spouses. However, on examination
of the means, ratings for males and females ranged between
"somewhat disagree" and "undecided" with respect to this
outcome, although males did endorse this outcome more
strongly than did females. Thus, there was not strong
endorsement for this outcome for males or females.
With respect to the outcome "Seek services for an
initial diagnosis," Spouse Active Caregivers and Child
Potential Caregivers endorsed this option more than did
Spouse Potential Caregivers. Active Caregivers would be
expected to endorse this option, based on their subjectively
defined role of caregiver, and knowledge about their care
receivers illness. Child Potential Caregivers may be more
likely to view symptoms as a problem needing an evaluation,
157
compared to Spouse Potential Caregivers (Pollitt, et al,
1989). Spouse Potential Caregivers, on the other hand, may
tend to view problems such as forgetfulness as a mutually
experienced problem, rather than a symptom of illness.
Thus, Potential Caregivers may not seek services for an
initial diagnosis, compared to the other two groups because
they are less likely to define the symptoms as a "problem"
requiring evaluation. This may partly explain why persons
with subtle signs of dementia may go undiagnosed for periods
of time. Pollitt et al. (1989) view this minimization of
problems as a strategy used by older couples for coping.
Care by gender bv case interaction. For the outcome
"Seek services for home care," with respect to the Drug
Toxicity case study, Female Active Caregivers endorsed this
option more than did Male Active Caregivers. Research does
support this finding (Barusch & Spaid, 1989; Miller, 1987),
where Male Active Caregivers utilized fewer formal services,
when compared to Female Active Caregivers. Miller (1987)
suggests that males view the caregiving role as congruent
with previous role expectations, and as a result, feel less
burden, experience more control over their environment, and
subsequently provide care without perceiving the need for
formal assistance. Other researchers (Pruchno & Resch,
1989) suggest that men in particular may feel an obligation
to provide care to a partner without seeking outside
assistance. While females tend to use more formal services,
158
such as medical care or counseling, males tend to use more
informal services, such as help from other relatives and
friends (Baraush & Spaid, 1989). Apparently, greater use of
formal services does increase the risk for
institutionalization, and this is reflected in females
greater use of formal services, perhaps due to feeling more
burdened than do males. However, Levin, Sinclair and Gorbach
(1986) reported that home care, for males only, decreased
the risk for institutionalization. The specificity for the
Drug Toxicity case study suggests several possibilities.
Perhaps the problems described in the case study were easily
diagnosed, as suggested by other analyses in this study, and
viewed as needing some sort of intervention other than
institutionalization or home care.
MANOVA with Diagnoses as Dependent Variables
Main effect for case study. Overall, participants were
accurate in rating a diagnosis as pertaining to the case
study that was read. For the Diagnoses of Normal Aging and
Drug Toxicity, participants agreed most strongly that these
diagnoses pertained to the Normal Aging and Drug Toxicity
case studies, respectively, and did not pertain to the other
case studies. Thus, for Normal Aging and Drug Toxicity
diagnoses, accuracy was high for participants when they were
asked to assign a diagnosis.
When symptom accuracy was analyzed earlier, a somewhat
different pattern emerged with respect to Normal Aging and
159
Drug Toxicity. With respect to the Normal Aging case study,
Behavioral and Affective symptom ratings were least
accurate, compared to the other case studies. With respect
to the Drug Toxicity case study, Behavioral, Cognitive and
Affective symptom accuracy was less than for Alzheimer's
case study, but greater than for the Depression and Normal
Aging case studies. Thus, participants were more accurate
with respect to these two case studies when they rated
actual diagnoses, rather than symptoms. It may be that
participants were asked to make distinctions between
symptoms that were too specific, and although these
participants appeared to recognize what was going on in the
Normal Aging and Depression case studies, as evidenced by
accurate labeling of diagnoses, attempting to measure
knowledge at the symptom level may be too specific and too
difficult for individuals that do not have experience with
these disorders.
Although participants most strongly agreed with
Alzheimer's Disease case study for the diagnosis of
Alzheimers Disease, participants were equally likely to
assign the diagnosis of Alzheimer's Disease to the
Depression and Normal Aging Case studies. This suggests
some confusion regarding these disorders, when asked to
assign a diagnosis. Differential accuracy for these case
studies may vary according to the actual experiences
participants have with these disorders.
160
When rating symptoms, participants were most accurate
in rating Behavioral, Cognitive, and Affective symptoms with
respect to the Alzheimer's Disease case study, compared to
the other three case studies. Thus, rating symptoms
resulted in greater accuracy for the Alzheimer's Disease
case study.
Participants most strongly agreed with the diagnosis of
Depression for the Depression case study, when compared to
the Alzheimer's Disease diagnosis. Thus, Alzheimer's
disease and Depression were accurately differentiated for
the Depression case study. However, the diagnosis of
Depression was equally likely to be assigned to the Normal
Aging and Drug Toxicity case studies, as to the Depression
case study. When symptoms were rated in an earlier
analysis, Depression and Normal Aging were not
differentiated with respect to the Behavioral and Affective
symptoms. Thus, regardless of ratings of symptoms or
assignment of diagnoses, some confusion persists with regard
to Depression and Normal Aging.
Overall, participants were accurate in assigning
diagnoses, although some uncertainty persisted with regard
to differentiating between Depression, Normal Aging and
Alzheimer's Disease. When participants rated symptoms,
which were analyzed in an earlier analysis, participants
were most accurate with respect to the Alzheimer's Disease
case study for all three symptom categories, and least
161
accurate with respect to the Normal Aging and Depression
case studies, for all three symptom categories. The results
of this analysis suggests that individuals do demonstrate
uncertainty about the differences between Alzheimer's
Disease, Normal Aging and Depression. These* findings are
certainly reflective of difficulties experienced in the
larger community by the medical profession. This may also
reflect differential experiences of participants in
recognizing symptoms in themselves or in family members.
However, within the family environment, the appraisal of
symptoms will impact how quickly a relative receives an
evaluation. It appears that the participants in this study
were more knowledgeable than expected with regard to
Alzheimer's Disease. This could be related to the
heightened awareness of the public about the disorder, or
perhaps the case study was written in a way that made
discrimination easier, as discussed earlier.
Multiple Regression Analysis with Diagnosis as
Dependent Variable
For the Alzheimer's case study, greater knowledge of
Alzheimer's disease, and fewer "Powerful Others" Locus of
Control attributions predicted greater accuracy of
diagnosis. Increased knowledge of Alzheimer' Disease as a
predictor of accuracy is fairly straight-forward. Fewer
"Powerful Others" Locus of control attributions may suggest
that accuracy of judgements are increased when individuals
162
cope with stresses better. Some research suggests that less
belief that random events or others can control personal
outcomes may lead to enhanced self-efficacy (Levine et al.,
1983) . Perhaps such individuals actively seek out more
information about their environment, because they perceive
that they do have some control over events that occur.
For the Depression case study, greater knowledge of
aging, poorer self-rated health, and less Filial Anxiety
best predicts accuracy of diagnosis. Individuals who
experience less anxiety over anticipated caregiving
typically describe their current relationships with older
relatives as good (Horne et al., 1990). Perhaps these
individuals do not look toward future caregiving as a
burden, and consequently may allow themselves to learn more
about older adults, and may exhibit fewer stereotypical
beliefs about older persons. Some research suggests that
increased anxiety over caregiving causes individuals to
distance themselves from the older person, which could
interfere with learning more about that older person, or
aging in general, as well as increase beliefs in stereotypes
about older persons.
Poorer self-rated health is more difficult to
understand as a predictor of accurate diagnosis for
Depression. However, poorer self-rated health is
significantly correlated with Depression for this sample (r
= .24, p < .05), but Filial Anxiety is not significantly
163
related to Depression. Poorer self-rated health is also
significantly correlated with decreased positive affect (r =
-.42, E <.01), lower self-efficacy (r = -.27, E < *05),
higher conscientiousness (r = .29, E < -01), and with Active
Caregiver Status (r = -.25, E < .05). Thus, poorer
self-rated health as a predictor of accuracy for Depression
may be related to active caregivers who tend to be high
achievers, and who thus may be more likely to seek out
information. Also, these individuals may have previous
experience with depression themselves, and thus, be more
accurate in recognizing symptoms.
Variable Intercorrelations for the Active Caregiver Group
For Active Caregivers, formal service use, and amount
of caregiving help from others was examined in relationship
to other variables. The negative relationship between
formal service use and Alzheimer's Disease knowledge is
interesting, although causality cannot be determined. One
interpretation that is more consistent with literature
reviewed is that formal service users may be using poor
coping skills (Schulz & Williamson, 1991), and are
vulnerable to institutionalizing their impaired family
member. Perhaps a poor knowledge base about the illness
contributes to the poor coping in terms of understanding
troublesome symptoms, and dealing with symptoms in more
effective ways.
164
The positive relationship between formal service use
and the use of Cognitive and Emotional coping skills, and
the rated effectiveness of Cognitive and Emotional coping
skills may be indicative of a very stressful caregiving
environment. Prior to institutionalizing a family member,
research suggests that burden increases, care receiver's
behaviors become more difficult to manage, and there may be
some change in the support network. These factors may
actually mobilize the caregivers coping efforts, as
suggested in the increased use of these coping strategies.
Increased formal service use by individuals who make
"powerful others" attributions about health related issues
is also understandable in terms of these individuals needing
support for coping with a relatives' health problems. These
individuals may not feel they can cope with symptoms they
experience as unpredictable and uncontrollable.
Increased formal service use is correlated with
increased symptom salience with respect to the Normal Aging
and Alzheimer's case studies, for Behavioral and Cognitive
symptoms. The increased probability of institutionalization
that is associated with formal service use is understandable
in terms of Behavioral problems and Cognitive losses
becoming more salient to the caregiver, and perhaps less
tolerable. The relationship between increased formal
service use and decreased accuracy of symptom ratings for
Alzheimer's Disease and Normal Aging case studies could
165
suggest that as stress and burden increase, the salience of
problem symptoms and behaviors increases and accuracy of
judgements decrease.
Higher use of other supportive persons was correlated
with less accuracy of symptom ratings for the Drug Toxicity
case study. Increased use of other support may allow family
members to get some distance from the caregiving situation,
and lessen individual responsibility. Perhaps accuracy is
lessened when one individual in not providing all of the
care, all of the time.
Additional Analyses using Age of Participant as an
Independent Variable
As discussed earlier, when age of participant (older
and younger) was used in a series of analyses instead of
Caregiver status, the results were the same, except for
unique findings in two MANOVA analyses. These unique
findings will be discussed.
MANOVA with Regression Variables as Dependent Measures
Age bv kinship interaction. When this MANOVA was
analyzed earlier with Caregiver status rather than
Participant Age, there were no significant findings for
Anxiety about Aging and Filial Anxiety. Thus, results for
these two variables are unique to the analysis with Age of
Participant as an independent variable.
For Anxiety about Aging, and Filial Anxiety, younger
children scored higher than older children, and higher than
166
younger spouses. In this study, these two variables were
significantly correlated (£ = .43, p < *01), and may both
reflect fears and concerns that younger adults have with
respect to growing older, and taking on additional
caregiving responsibilities. These younger children are
likely to have children still living in the home, and the
idea of caring for an older parent may be reslated to
increased anxiety about taking on additional
responsibilities that may extend beyond sel f:-perceived
resources (Horne et al., 1990).
For Anxiety about aging and Filial Anxiety, older
spouses scored higher than older children and younger
spouses. For these individuals, anxiety may be elicited by
considering further increases in caregiving, since the older
spouses are most likely to be Active Caregivers.
Also significant with Age of Participant used as an
independent variable were Locus of Control-Powerful Others,
and Health Locus of Control-Internal. These findings did
not emerge when Caregiver status was uses as an independent
variable in earlier analyses. The finding that younger
children made more "Powerful Other" attributions than did
younger spouses was surprising, since externality tends to
increase with age (Abel & Hayslip, 1987). This may be
related to the younger children have more responsibility,
and perhaps feeling more overwhelmed and less able to
control outcomes. The finding that older spouses made more
167
"Powerful Others" attributions than did younger spouses is
more consistent with research that suggests an increase in
the use of such attributional styles with aging (Abel &
Hayslip, 1987).
MANOVA with Outcome as Dependent Measure
When this MANOVA was analyzed earlier, using Caregiver
status rather than Age of Participant as an independent
variable, the results showed Children endorsing the "Home
Care" outcome more than Spouses. When Age of Participant
was used as an independent variable, the findings for
Children and Spouses were the same, but the effects were
specific to younger children and younger spouses. One
additional finding was uniquely related to age, however.
Results showed that older spouses endorsed the "Home Care"
outcome more than did younger spouses. The Care by Kinship
interaction using caregiver status instead of age (discussed
earlier) resulted in Children endorsing "Home Care" more
than Spouses. This finding for differences between younger
and older spouses is consistent with the literature reviewed
on gender and caregiving. Older spouses are much more
likely to keep their partner at home, and studies suggest
that the longer the period of caregiving, the lower the
burden. Mittelman et al. (1993) looked at interventions to
delay insitutionalization of carereceivers, and found that
the younger spouses were more likely to place their partner
in a nursing home. Thus, older spouses would not
168
necessarily be at risk for institutionalizing their
partners, unless they experienced frail health themselves.
In the earlier MANOVA analysis where Caregiver status
was used rather than Age of Participant for an independent
variable, the outcome "Seek services for home care" showed
Female Active Caregivers endorsing this outcome more than
Male Active Caregivers. With Age of Participant as
independent variable, an Age by Kinship interaction was
found, where younger children were more likely to endorse
this decision than younger spouses. This is consistent with
research that suggests that spouses are less likely to use
formal services, whereas children in their 4 0's are likely
to have multiple responsibilities at home and at work, and
may use increased formal services.
Also, older spouses endorsed the "Seek professional
services for home care" decision more than did younger
spouses. This is more surprising, since formal service use
has been reported to be less in spouses. One possibility is
that the older spouses are in frail health, or disabled in
some way, and use services for meals to be delivered, or for
help with heavy tasks such as lifting and cleaning.
Methodological Limitations
Participants in the present study were not randomly
selected, thus introducing a sampling bias. Participants
were actually self-selected with respect to unknown
variables. Since participants who were interested in
169
participating were required to send a reply postcard or make
a phone call, this suggests that some motivation, interest,
or perhaps knowledge was characteristic of these
individuals, as opposed to those who did not respond.
Furthermore, self-selected participants in this study may
have been experiencing less stress or burden, or perhaps
were coping better than those not participating, and thus
had more time and energy available for participating in a
study.
An alternate explanation is that participants were more
stressed, and viewed the study as an opportunity to receive
additional support. Individuals may also have agreed to
participate because they were facing some important
decision, or their family and support structure was in
transition.
Based on this investigator's personal interviews with
the caregivers, it appears that several explanations
mentioned above may be viable. Several caregivers
interviewed did actually appear to be coping effectively, in
terms of having a structured daily schedule, goals in mind
for further treatment and possible interventions, and a
positive framework for dealing with everyday problems. This
type of participant was very unusual, and almost always
involved spouses.
This was in striking contrast to other participants who
appeared to need to express the anger and disappointment
170
experienced from conflict that within the extended family,
as a relative began to deteriorate, and fights erupted over
guardianship and distribution of money and power. In fact,
several child participants stated that this was the first
time they had ever talked to anyone outside the family, or
expressed their feelings about these stressful experiences.
Also, some participants appeared to be in a transition
period, with respect to evaluating their personal resources,
and demands of caregiving. These individuals were
entertaining the idea of placing their family member in a
nursing home, and appeared to need information, and
reassurance about guilt over abandoning their family member.
Thus, participants appeared to be very different in their
motivations for being involved in this research study.
An attempt was made to include as many males as
possible in this study, but a total of only 17 males
participated. With such a small sample, interpretation of
any effects for males, or generalizations about the
findings, may be hindered by the decreased heterogeneity.
The small number of males recruited may be related to the
method of locating potential participants for this study.
Letters were sent out by the local Alzheimer's Association,
from a list of individuals who had called the Information
and Referral service. The low use of formal services for
males may suggest that males contact such services less
frequently, and thus would make up a small percentage of the
171
individuals who eventually received information about the
study. In fact, Coyne (1991) reported that most callers to
one information and referral service were women, with men
making only 21% of the calls.
The cross sectional design of this study created an age
and cohort confound. Thus any impact related to differences
between older and younger cohorts could not be discerned.
Also, causal sequences with regard to variables of interest
could not be adequately established.
Participants in this study were not matched on
characteristics that could possibly influence their
responses. Thus, factors such as education, income and age
could have impacted some of the variables of interest in
this study differentially. Other variables with respect to
caregivers that were different could also mask results.
These included not limiting carereceivers to a diagnosis of
Alzheimer's Disease, but also including caregivers of
relatives with cognitive impairment due to diabetes and
stroke. These illnesses have a different pattern of symptom
onset, and disease progression, and may have influenced the
caregivers perceptions differently from those caring for an
Alzheimer's Disease relative. Furthermore, length of
caregiving was not matched or controlled for, so that
caregivers in this study were experiencing very different
carereceiver behaviors, depending on the stage of illness.
Caregivers were also notmatched on use of formal service
172
use, which has been demonstrated to be related to a number
of caregiver and carereceiver outcomes, such as burden and
institutional- ization. In fact, in this study increased
formal service usewas correlated with less Alzheimer's
Knowledge, suggesting that this may be an important factor
to control ormatch with respect to participants.
The analogue-type design of the present study also
limits the generalizability of the results, although greater
control of variables can occur with this type of study.
Participants were given case studies to read, and an attempt
was made to elicit genuine attitudes and reactions, and
create a "set" for the caregiving experience. Participants
were encouraged to re-read the cases, and were instructed to
"get an impression" of what was going on in the case study.
However, attitudes and perceptions are difficult to tease
out from test-taking stances, and other factors related to
this type of design. Active Caregivers, in particular,
approached these case studies with a "set," related to their
own experiences with caregiving.
Conclusions
Overall, the results of this study imply that
individuals do perceive symptoms of illness differently.
This differential perception was evaluated in this study by
measuring symptom salience, which appears to reflect a bias
for "attending to" and "reporting" some symptoms more or
less than others. It appears that a bias in reporting
173
symptoms could be related to the burden of caregiving. If
an individual is experiencing burden, they may attend to
aspects of the caregiving context more or less. Thus, if a
caregiver is upset or bothered by certain symptoms,
sensitization to those symptoms may occur, with more or less
attention subsequently paid to those symptoms. However, if
the symptoms are stressful, the caregiver could over or
under interpret the presence of the symptoms, and thus may
not be an accurate reporter of those symptoms. However, it
is difficult to discern to what extent burden creates a
sensitivity to symptoms that are difficult to manage, based
on the present study. It is also difficult to determine the
contribution of gender role expectations and aging
stereotypes to biases in perception and reporting. If an
individual expects that an older person will have problems
with memory, they may identify a mild problem as more
severe, due to the expectation, or bias toward expecting
decline and deterioration as a function of aging.
With respect to Active and Potential Caregivers,
overall differences were not found for symptom salience or
accuracy of judgements. This may be a function of the
selection process for participants, as described earlier,
resulting in these two groups being more similar than
expected. However, some of the gender and kinship-based
differences in the burden and coping literature are
consistent with the interpretation of the results made by
174
this investigator, where burden may be related to the
salience of symptoms, and this may impact accuracy of
judgements.
It appears that Females in the Caregiver role do tend
to notice and report Cognitive and Behavioral types of
symptoms more than Females who are not yet in the caregiving
role. It is significant that Female Active Caregivers are
also less accurate in judging symptoms, compared to Male
Active Caregivers.
These findings have major implications for how females
cope with the stress of caregiving. Female Active
Caregivers tend to use what may be "ineffective coping
strategies", in that the increased use of problem-focused
and emotion-focused coping strategies, at least in the
caregiving context, may lead to more burden and stress,
secondary to applying these strategies inappropriately.
Thus, attempting to resolve the problem of "incontinence" in
the carereceiver may lead to increased frustration, because
this problem must be accepted as part of the carereceiver's
process of deterioration, and is difficult to resolve or
control.
The tendency for females to focus at the level of the
interpersonal interaction may increase salience for certain
symptoms or behaviors that are bothersome, or that are a
reminder of the loss of the relationship. This increased
salience, or bias in attending to these symptoms, may
175
actually lead to a decrease in accurate reporting of those
symptoms.
Perhaps differences in gender role expectations are
related to these findings for female caregivers. The
tendency of females to focus more on the interpersonal
relationship was suggested by Miller (1987) This could
account for a "bias" in symptom reporting for females.
Increased efforts to cope with the disruptive symptoms in
the carereceiver by attempting to solve a problem that must
be accepted, or by avoidance and wishful thinking is likely
to increase burden.
However, the difficulty these Female active Caregivers
have in accurately judging symptoms implies that they may
some symptoms may be misinterpreted as "purposeful" or
"willful", which certainly reduces the ability to cope
effectively, and increases burden even more. These findings
for Active Female Caregivers suggest thatinterventions need
to occur early in the process of caregiving, in order to
avoid the cycle of biases and misconceptions contributing to
increasing levels of burden, andultimately in a nursing home
admission. An emphasis should be on increasing the use of
more appropriate coping skills, that address specific
problems, such a wandering or getting lost in a familiar
surrounding.
Findings for males must be interpreted with caution,
due to the small sample size. However, results do suggest
176
that Male Active Caregivers do not experience a bias with
respect to the salience of symptoms, and are more accurate
in judging symptoms when compared to Female Active
Caregivers. This appears consistent with research
suggesting males experience less burden, and keep the
carereceiver at home longer. It is possible that Males do
approach the caregiving situation differently, and
experience different outcomes, compared to Females, and part
of that difference is related to "less attention" to
behaviors and affective expressions of the carereceiver.
Again, Miller (1987) suggested that men tend to feel more
comfortable with and "instrumental" rather than
interpersonal style.
Other research with males suggests that greater self
rated health problems are reported for caregiving males
(Hooker et al., 1992). This suggests that the focus on
somatic symptoms may be an indirect indicator for stress.
Perhaps interventions for males should focus on finding ways
for men to benefit from support groups. Given the
gender-based differences in approaches to, and perceptions
of, the caregiving experience, it is likely that males would
not find a more traditional support group helpful. Perhaps
groups for men should be more sensitive to their style of
approaching caregiving.
With respect to Kinship, there were no overall
differences in symptom salience and accuracy of symptom
177
ratings for Spouses and Children. However, results did
suggest that Child Caregivers were more accurate in rating
Behavioral symptoms than were Spouse Caregivers. While this
result is counterintuitive, based on research that suggests
Child caregivers are more stressed and burdened, in this
study, characteristics of the sample may have accounted for
this finding. Child caregivers may have been less burdened
than expected, due to the significant amount of help and
support received from others that caregivers in this study
reported receiving.
Participant Age emerged as a significant predictor in
several analyses performed. Participant age also was
related to caregiver status in this study. The oldest
participants were Active Spouse Caregivers, and the youngest
participants were Potential Child Caregivers. Due to Age of
Participant emerging as a predictor in several analyses,
data were reanalyzed, using a median split for age, with
younger spouses and children aged 49 and below, and older
children and spouses 50 and older. Several unigue findings
emerged from these analyses when age was used as an
independent variable instead of caregiver status.
The finding that younger children endorsed "Home Care"
more than did younger spouses may imply that other demands
and responsibilities, related to cohort effects, will
influence decisions about home care versus
institutionalization. However, the finding that Child
178
Caregivers were more accurate, and endorsed "Home Care" more
than did Spouse Caregivers suggests that such a decision
would be made based on information about personal resources,
and more realistic expectations about the illness, rather
than culturally based expectations of reciprocity.
Despite the greater accuracy of judgements, and the
willingness to endorse "Home Care", Child Caregivers
experience significant burden, which may be related to the
complex demands of caring for children and older adults.
Interventions for Child Caregivers may best be utilized by
increased availability of respite services and adult day
care.
The Potential Caregivers, as a whole where not
significantly different from the Active Caregivers. This
was surprising, given the different experiences and life
stresses that characterized each group. As discussed
earlier, the Potential Caregivers in this study may not be
representative of those in the general community, and in
fact appear to be more knowledgeable than expected about
aging and Alzheimer's Disease.
The finding related to the outcome "Seek professional
services for a diagnosis is however, is important. The
reluctance of Spouse Potential Caregivers to endorse this
outcome suggests, as mentioned earlier, that spouses may not
be as likely to identify symptoms as an "illness" per se.
This may result in a delay of care for the partner of that
179
spouse, and risk the worsening of a potentially treatable
illness. Interventions for Spouses should involve the
dispensing of information, such as that provided by
information and referral services regarding symptoms of
illness and resources available.
Ultimately, physicians treating older persons may need
to be more successful at detecting problems when visits
occur for physical problems, since older persons are more
likely to visit a physician for physical problems. Arden et
al. (1993) reported a very low rate of detection of
cognitive impairment in older medical patients, and
suggested that the general practitioner is the best resource
for identifying cognitive problems, and allowing further
evaluation.
Overall, several variables were important predictors of
symptom salience and accuracy of judgements. Increased
symptom salience and decreased accuracy of ratings were both
associated with greater Filial Anxiety, Health Locus of
Control (Chance), and self rated health. This suggests
salience for symptoms may be associated with greater burden,
which may impact accuracy of perception. Interestingly,
Cicirelli (1988) found greater "filial anxiety" in college
aged females than males when they were asked to anticipate
caregiving in the future. Thus, whatever process mediates a
bias for attending to and reporting symptoms may precede the
onset of burden associated with actual caregiving. The
180
possibility exists thatattending more to symptoms may be
related to gender-base differences in perceptions of
relationships, or in personality style.
The findings that were specific for case studies were
also unexpected, and could reflect problems inherent in the
construction of the case studies and symptoms lists.
Overall, participants tended to be accurate in judging
symptoms of Alzheimer's Disease, and in labeling the case
study with the diagnosis of Alzheimer's Disease. Symptom
salience was also greatest for the Alzheimer's case study.
Participants appeared to be more knowledgeable than expected
about Alzheimer's disease. This may reflect the increased
attention this disorder has received in the media.
With respect to Depression, participants were least
accurate in judging symptoms of Depression, and were
somewhat more accurate in assigning a diagnosis of
Depression to the Depression case study.
For Drug Toxicity, participants more accurate in
identifying symptoms than for Depression and Normal Aging.
However, participants were able to accurately assign the
Diagnosis of Drug Toxicity to the Drug Toxicity case study.
With respect to Normal Aging, participants least accurate in
identifying symptoms for this case study, but were accurate
at assigning the Diagnosis of Normal Aging to the Normal
Aging Case study. Findings for both Normal Aging and Drug
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Toxicity suggest that the level at which participants were
asked to identify a disorder was important for accuracy.
These findings that were specific to case study, and to
diagnosis, have several implications. First, overall the
accuracy for participants appears to be better when they
were asked to assign a diagnosis, rather than rate
individual symptoms. Participants may have been able to
make better qualitative than quantitative judgements about
the cases. Furthermore, the personal experiences and
knowledge of the participants also were likely to contribute
to the accuracy of judgements for specific cases studies.
And lastly, participants appeared to have some difficulty
discriminating between Alzheimer's Disease, Depression and
Normal Aging. This may reflect stereotypes that
participants hold about older persons, where there may be a
tendency to ascribe more serious symptoms to a case, just
because the subject is an older person. One finding that is
surprising is related to the Normal Aging case study. While
participants were least accurate in judging symptoms for
this case study, they were very accurate in assigning the
diagnosis of Normal Aging. It is possible that by offering
participants a choice of a Normal Aging Diagnosis, this was
in some way "legitimating" the Normal Aging process, in a
way that was not possible when they were rating symptoms.
This highlights the importance of the context of any
182
education programs for increasing awareness of aging and
illnesses associated with older adults.
Most research studies reviewed by this investigator
defined symptoms of the illness associated with the
carereceiver as "objective burden," and emphasized that the
carereceiver characteristics were not as important in
determining burden as were caregiver characteristics. Only
two studies reviewed (Deimling & Bass, 1986; Pruchno &
Resch, 1989) looked at the impact that carereceiver symptoms
may have on the caregiver. Based on results from this
study, it appears that symptoms do have a personal meaning,
which impacts appraisal and judgement about the symptoms.
The relevance and meaning of certain symptoms to the
caregivers certainly deserves further study. A number of
studies reviewed (Mittleman et al., 1993; Montgomery &
Borgatta, 1989) looked at the impact of caregiver
interventions, with respect to impact on the caregiver, and
impact on rate of institutionalization. Only recently have
studies looked at outcomes for caregivers in any meaningful
way, other than "global satisfaction" with support and
education groups (Braithwaite, 1992; Mittleman et al.,
1993). It appears that one study found interventions based
on counseling, education, and respite help to actually
lengthen the stay of carereceivers in the community,
however, these authors used spouse caregivers, who already
tend to keep their partner at home longer. In another study
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Montgomery & Borgatta, 1989), respite and education
interventions had differential outcomes for spouse and child
caregivers, with spouses being more likely to
institutionalize their partner, and children being less
likely to institutionalize a parent, following intervention.
The importance of research that measures caregiver
outcomes is related to the cost savings associated with
keeping a family member in the community longer (Hu, Huang &
Cartwright, 1986). Interventions that can better support
caregivers in the community thus have relevance for public
policy decisions regarding the allocation of resources and
funding. While family members have traditionally rated
support groups and interventions as "satisfactory," this is
not a meaningful outcome, according to Braithwaite (1992),
in terms of justifying the allocation of money to maintain
intervention programs. She emphasized that from a public
policy standpoint, outcome studies have not demonstrated a
consistent impact on caregiver burden or well-being, and
that part of the problem is related to the types of measures
used for evaluating burden, and the lack of applicability to
the general community population. Thus, the evaluation of
caregiver outcomes from various interventions needs too be
an ongoing focus of research.
Based on findings from this study, more meaningful
outcomes for interventions may be achieved if support groups
considered the differential impact of the caregiving
184
experience on spouses and children, and geared interventions
more specifically to these groups. Spouses and children
appear to differ in how they evaluate and appraise symptoms,
and in the manner that they cope with the caregiving
situation. In particular, for female spouse caregivers, a
focus for interventions might be enhancing the use of
appropriate coping skills for dealing with behaviors that
are bothersome. For male caregivers, groups that focus on
the issues that men find relevant would be important, given
that males tend to avoid support groups, and may even
under-report the impact of stress and burden.
Although some research suggests that caregivers of
older persons with disabilities are similar in levels of
stress and impact of caregiving, findings from this study
suggest that the symptoms associated with cognitive
impairment tend to have special meanings for caregivers, in
terms of the loss of a relationship, and the ability to
maintain some control and predictability in their
environment. Thus, it seems that resources would be best
allocated by defining the needs of dementia caregivers
differently than caregivers to chronically physically ill
older persons. This study suggests the possibility that
perception and appraisal of symptoms have a relationship to
burden that is experienced, and that this may impact
judgements about what treatments or interventions may be
needed. This information appears important to consider when
185
designing support groups, and developing programs to
increase knowledge of individuals about Alzheimer's Disease.
APPENDIX A
INFORMED CONSENT FORMS
186
187
INFORMED CONSENT FORM
TITLE OF STUDY: Caregivers appraisal of Alzheimer's disease symptoms and the relationship to decisions about care.
INVESTIGATORS: Bert Hayslip, Ph.D.; Phyllis Jones, M.S.
PURPOSE OF THE STUDY: The purpose of this study is to explore the perceptions of individuals with respect to problems experienced by older persons.
PROCEDURES: The participants will be asked to complete paper and pencil questionnaires that they receive by mail, which requires from one to three hours. Participants will then meet individually with a research assistant for about one hour in order to read some additional information and answer questions about what was read.
SAFEGUARDS: Participants' answers will be kept confidential, and names will not be attached to the questionnaires in any way.
Participation in this study is entirely voltantary, and you may end your participation at any time. To the best of our knowledge, participation in this study will not cause you physical or psychological harm.
BENEFITS: Participation in this research study would offer an opportunity to learn more about older persons and some of the problems they experience.
This study also provides an opportunity to increase our understanding about how people perceive and interpret symptoms of illness. Information gained from this study may contribute to our knowledge of family coping and decision making, as well as provide directions for future interventions.
ADDITIONAL QUESTIONS: If you have any further questions about your participation, feel free to contact Phyllis Jones at (214) 341-2107, Cris Anderson at (817) 898-1103 or Bert Hayslip at (817) 565-2671.
188
RESEARCH PARTICIPATION CONSENT FORM
The purpose of this research study is to study how personality factors, attitudes towards, and knowledge about older adults may related to the perceptions of problems that many older adults experience. I understand that my responses will be kept anonymous and that my questionnaires will be identified with only by code. There are no links between my identity and my specific questionnaire. I have read a clear explanation and understand the benefits that might be expected. I understand that the procedure to be performed is investigational and that I may withdraw by consent for participation at any time.
With my understanding of this, having received this information and satisfactory answers to the questions I have asked, I voluntarily consent to the procedure designated above.
Signed:
Date:
This Project has been approved by the UNT Institutional Review Board
for protection of human subjects for research
APPENDIX B
CASE STUDIES
189
190
You will now be asked to read a case study pertaining to
older adults. After you read this page of instructions,
please ask the research assistant for the case study and
hand in your completed questionnaires.
Please read over the case study carefully, as many times as
you require to understand what is being described. When you
have read the material to your satisfaction, please hand
this case study to the research assistant, who will then
give you a set of questions that pertains only to the case
study vou iust read.
When you have completed the questions, hand them in, and you
will receive a different case study pertaining to older
adults for you to read, and answer questions.
Each time you read a case study. turn it in to the research
assistant and answer questions pertaining only to that case
study.
191
(Alzheimer's Disease)
#
Mrs. Lucas, a 68 year old mother of three daughters,
has lived alone since her husband, a retired railroad
worker, died from a stroke 5 years previously. Mrs. Lucas,
typically an outgoing and friendly person, spends her time
volunteering for local church activities, and serves as
chairperson for several committees. Her daughters, along
with grandchildren, are frequent visitors in Mrs. Lucas's
home.
Six months previously, Mrs. Lucas was fired from a
job as a real estate agent because of increased mistakes
with her work and arguments with co-workers. Apparently,
Mrs. Lucas forgot several very important meetings. Despite
numerous reminders and memos, she forgot to write the
appointments in her calendar, and did not appear for the
meetings. Some of her co-workers noticed that she failed to
keep up with her correspondence with customers, and that
when she did her handwriting was illegible, and the content
disorganized and confusing. For years, Mrs. Lucas's
neatness and organization were recognized by co- workers,
but more recently her desk and work area were cluttered and
disorganized. Several long time friends mentioned to one of
Mrs. Lucas's daughters that she had mixed up several
192
important church activities, resultingin loss of time and
money to their volunteer organization.
Out of concern for their mother, Mrs. Lucas's daughters
spent some time with their mother, and noticed that she had
let her household chores get behind, and complained that
"someone had broken into the house," because she could not
locate several pairs of earrings. Her oldest daughter later
found the earrings hidden under
a mattress, where her mother had forgotten about hiding
them. Her daughters also found a stack of bills that their
mother had forgotten to pay. When the unpaid bills were
pointed out to her she behaved in a very uncharacteristic
fashion, and yelled at her daughters for trying to "control
her money." Her daughters also noticed their mother would
become lost while driving to familiar places, such as the
grocery store. Mrs. Lucas's daughters urged her to get a
checkup, but their mother insisted that she was only
bothered by back pain, and nothing else. She eventually
agreed to a checkup for her "back problem."
When evaluated by a family physician, Mrs. Lucas was
initially very friendly and talkative, but appeared to
discuss only superficial topics, and denied that she was
having any problems functioning at home. She appeared to
have some difficulty sitting still, and would get up and
pace the room while talking at times. Mrs. Lucas did
complain that her daughters were becoming "too nosy," and
193
would take all of her money and jewelry if she were not
careful. When asked, she knew the season of the year, but
gave the year as "1987." When her physician asked about the
loss of her job recently, she said that she "quit," because
"everyone was trying to steal her customers," and denied
making mistakes or forgetting about important appointments.
After the physician examined Mrs. Lucas, and was unable
to find a physical problem with her back, he met with her
daughters to gain additional information. Mrs. Lucas's
oldest daughter reported that she was very concerned about
her mother's forgetfulness around the house, where she is
now unable to find items that she had just brought home from
the store and put away. Her daughter commented that in some
ways her mother's memory seemed better than even, because
she spent more time talking about details of her own
childhood and early years of marriage. Another daughter
reported: "her favorite books and hobbies have been put
aside, and she seems to have forgotten how to cross stitch."
Mrs. Lucas's suspiciousness and accusations of stealing were
especially upsetting to all three of her daughters.
According to her daughters, Mrs. Lucas had "taken a walk
around the block in her nightgown" at about 2 A.M. without
waking anyone else up, and did not appear to believe her
behavior unusual. Mrs. Lucus left her physicians's office
after her examination was complete, and her daughters began
talking with the physician, but she soon returned to the
194
secretary's desk because she could not find the elevator
where the car was parked.
195
(Drug Toxicity)
#
Mrs. Molloy, a 70 year old widow, recently moved from
her home of 40 years in rural Nebraska to an apartment in
Chicago to be near her only son. After her husband died 1
year ago"from a protracted illness, she began to feel lonely
and somewhat anxious living in their country home. Mrs.
Molloy did not work outside the home during her 40 year
marriage, and committed her time and effort to raising her
only son, who now has a successful medical practice in
Chicago. Mrs. Molloy has many friends through her church in
the small community, but has felt that "something is
missing" since her husband died, and has found it difficult
to remain in her home alone. Mrs. Molloy had experienced
periods of worry in the past, especially when her husband
was first diagnosed with emphysema 4 years previously. Her
family physician, who was also her next door neighbor,
prescribed medication to calm her nerves after her husband
was first diagnosed with emphysema. Mrs. Molloy reported
that she felt better during the day when she took her
medication in the morning. She continued to take her
medication daily over a two year period, and was still using
the medication when she moved to Chicago.
Mrs. Molloy experienced the move to the "city" as
stressful, and although her apartment was only 5 minutes
196
from her son and his family, she was reluctant to visit them
in the evenings. She told her son that she was nervous at
night because of the higher crime rate in the city, and
eventually had her son install an alarm system.
Soon after her move to Chicago, Mrs. Molloy began to
have difficulty sleeping at night, even after her alarm
system was in working order. At Mrs. Molloy's request, her
son recommended a physician who could treat her sleeping
problems. Her new physician suggested her sleeping problem
was not serious, and he prescribed a mild anti-anxiety
medication to be taken at night. Mrs. Molloy slept well for
a while, but her sleeping problem eventually worsened to the
point where she was taking double the prescribed dosage of
her mild anti-anxiety medication just to fall asleep, and
often found it necessary to repeat the dosage at least once
during the night.
Mrs. Molloy began to worry each morning about being
able to fall asleep again that evening, and found it too
difficult to discuss her concerns with her son or physician
without sounding like a "complaining old woman." As she
experienced more and more anxiety each morning, she began to
take more of her sleep medication, several times a day. Mrs.
Molloy felt embarrassed about her use of medication so often
to feel better, and thus avoided a lecture from her
physician by obtaining another prescription from her
specialist who treated her arthritic problems. A third
197
physician, her ophthalmologist, prescribed the mild anti-
anxiety medication she was taking for sleep, and was unaware
that her family physician was also prescribing the sleep
medication.
Mrs. Molloy's family began to notice that she was
lethargic and even appeared intoxicated on several
occasions. Her son searched her apartment for alcohol, but
found none. Mrs. Molloy angrily protested that she would
never use alcohol because of the terrible example set by her
father, who was a severe alcoholic. Mrs. Molloy's son
stayed with her over a weekend after he noticed a
significant increase in her confusion, where she began to
loose track of her conversation and skip from topic to
topic, describing events as having happened that day that
actually occurred in the recent past. Her son noticed that
her confusion worsened at night. On several occasions
during that weekend, she did not know where she was or the
year, and even called a delivery person by her son's name.
Her restlessness and agitation appeared to fluctuate during
the day, varying from extreme hyperactivity to lethargy.
Late on Saturday night, her son became very concerned when
she reported seeing people hiding in her bedroom, and some
strange little animals running all over her bed and up her
bedroom drapery. He called his family physician after she
forget that she was in her own home, and began talking about
"living in my childhood home."
198
(Depression)
#
Mrs. Stone, a 62 year old mother of two, lost her
husband of 40 years when he died suddenly of a heart attack.
Prior to his death, the couple enjoyed their retirement
years by traveling, and actively participating in the social
community of their small town. Mr. Stone retired from his
job with the railroad 5 years prior to his death, and Mrs.
Stone was a retired teacher. Mrs. Stone's two daughters
noticed, even at the funeral, that their mother was "not
herself." She lost interest in talking with her long time
friends, and in hobbies such as sewing and gardening. Over
the month, Mrs. Stone began to skip meals, and after she
lost 15 pounds, her daughter brought her to the family
physician for an evaluation.
Mrs. Stone was aware of her poor motivation and lack of
interest, and expressed feelings of guilt for "letting her
family down," and for not being able to anticipate her
husbands physical problems before he died. She reported
that she loved her daughters and grandchildren, but just did
not feel up to visits because she was so tired all the time.
Prior to the visit to her physician, she was not dressing
each morning, but stayed in her night clothes during the
day.
Upon interview by her physician, Mrs. Stone walked into
the room very slowly, and did mot move during the visit.
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She knew her name, that she was being evaluated by her
physician for "not being able to do anything right anymore,"
as well as the year and date. She did not speak
spontaneously, but waited for a question from her physician.
Her physician remembered her as an energetic woman, but
noted that she was slumped down in the chair, wore wrinkled
clothing and had not styled her hair. She often waited a
minute or more before responding, and asked for questions to
be repeated, because "my mind wandered off." She reported
concerns about her memory failing, because she recently went
to the grocery store, and could not remember what she needed
to buy. Mrs. Stone expressed concern that she may have a
"brain tumor," or some other serious physical problem
because she could not watch a movie or read a book without
her mind wandering off. She reported difficulty sleeping at
night, and often waking up at 3 o'clock in the morning. She
also reported not feeling hungry most of the time. Although
Mrs. Stone was aware that things were not going well, she
resisted seeing her physician, because "it won't do any good
anyway." Although she forced herself to see her daughters
on occasion, she reported feeling little pleasure in such
visits.
200
(Normal Aging)
#
Mrs. Butler, a 66 year old mother of two sons and a
daughter, has been living alone in her southern home since
her husband died from cancer about 3 months ago. He was
diagnosed with liver cancer only 3 months before he died,
and deteriorated rapidly after the diagnosis was made. Mrs.
Butler was a substitute school teacher for 25 years, but
stopped working when her husband retired one* year ago, so
that the couple could spend their retirement years
traveling. Mrs. Butler has spent much of her time alone
since her husband died, and her oldest son invited her to
live with his family in a large Eastern city. Her son
became concerned when he heard from a cousin that Mrs.
Butler had been avoiding social gatherings in her community
because she felt uncomfortable attending "couples
activities" when she was not alone. Mrs. Butler found it
very difficult to make a decision about moving, but finally
decided to sell the house and move in with her son and his
family.
Mrs. Butler moved into her son's home, and shared a
room with her 19 year old granddaughter, who appeared "very
upset" about losing her privacy. Mrs. Butler began to feel
very guilty about imposing on her son's family, and would
sometimes skip evening meals with the family and eat alone
201
later in the kitchen. When her son lectured her about
spending "too much time alone," Mrs. Butler became upset
and told her son to stop "treating me like a child." Mrs.
Butler eventually became more comfortable in her son's home,
although she wished resentfully that she had moved some of
her own furniture from her old home. She experienced some
mild sleep problems, especially when the family was out for
the evening, and she was alone in the house. Mrs. Butler
noticed that she was having some difficulty remembering
things, and when she could not recall the name of her
granddaughter's new boyfriend, she mentioned that she should
see a physician. She mentioned to him that she was sleeping
poorly when alone in the house, and was bothered by leg pain
as well, and asked him to make her an appointment.
Upon interview by her physician, Mrs. Butler reported
feeling "sad" and lonely since her husband died, but
reported that a concern was her occasional memory
difficulties. When asked about specific problems, Mrs.
Butler reported not being able to remember her
granddaughter's new boyfriend's name, and asked if she
perhaps were developing some serious disease that was
causing her leg pain. When asked about her adjustment to
her son's home, she denied any major problems, and
complained about crime in the big city.
APPENDIX C
SYMPTOM LIST AND OUTCOMES
202
203
Symptom List and Outcomes
Thinking about the case study of an older person you just read, please indicate on the scale provided, the extent to which each symptom listed below is characteristic of the older person described in the case study.
Not at all Somewhat Undecided Mostly Strongly 1 2 3 4 5
1. memory problems for recent events 2. hostility or irritability 3. displays a lack of concern about problems in
functioning 4. misplaces objects 5. impaired judgment 6. thoughts of suicide 7. forgets names of familiar objects 8. incontinent of urine 9. anxiety 10. problems in performing mental calculation 11. desire for withdrawal from social relationships 12. sleep disturbance 13. feels low or sad 14. neglects appearance 15. feels guilty 16. significant personality changes 17. problems finding the correct word in conversations 18. confusion 19. suspiciousness or jealousy 20. memory problems for events in the distant past 21. loss of interest in usual activities 22. feels fatigued 23. wandering away from home 25. decreased appetite 26. unable to organize daily tasks such as cooking or
finances 27. complains of problems with memory or of physical
problems such as constipation or ulcers 28. impaired ability to concentrate 29. physical aggression 30. disorientation to time and place 31. agitation and restlessness 32. fears being left alone 33. asking repetitive questions .34. impaired planning and organization abilities
204
To what extent would each of the following be appropriate for the case study you just read?
1. Institutionalization 2. Home care 3. Seek professional services for initial diagnosis 4. Seek professional services for home care
APPENDIX D
DIAGNOSES
205
206
To what extent do you believe each of the following describes what is occurring in this particular case study? Please use the scale provided and circle your answer.
Multiple Regression Analysis of Behavioral. Cognitive and
Affective Accuracy Scores for Depression Case Study
Dependent Measure
Independent Variable
Beta B R2 F
Dep Aff Ac Expressive Support
-.27 -.32 .06 6.15b
*£ <.01
218
Table E-10
Multiple Regression Analysis of Behavioral. Cognitive and
Affective Accuracy Scores for Normal Aging Case Study
Dependent Measure
Independent Variable
Beta B R2 F
Nag Cog Ac H-LOC (Chance) .30 .72 .08 7.57b
Nag Aff Ac Filial Anxiety .37 . 16 . 11 10. 46d
Expressive Sup. .41 .41 . 16 8. 03d
Geri. Dep. .25 .42 .21 7 .85a
H-LOC (Chance) .23 .25 .25 7 . 32a
Note. Geri Dep. = Geriatric Depression Scale, Expressive Sup. = Expressive Support, H-LOC (Chance) = Health Locus of Control - Chance Factors
aP < .05. bE < .01. cp < .005. p < .001
219
Table E—11
Multiple Regression Analysis of Behavioral. Cognitive and
Affective Symptom Salience for Alzheimer7s Case Study
Dependent Independent Beta B R2 F Measure Variable
Az Beh Problem-Focused .25 .11 .05 4.92a
Coping
Az Aff Expressive Support .33 .30 .06 5.91c
Filial Anxiety .28 ._12 . 13 6.43b
aE < .05. bp < .01. cp < .005
220
Table E-12
Multiple Regression Analysis of Behavioral. Cognitive and
Affective Symptom Salience for the Drug Toxicity Case Study
Dependent Measure
Independent Variable
Beta B R2 F
Drg Beh Self-Rated Health
.31 4.22 .09 8.82c
Problem-Focused Coping
.25 .14 . 15 7. 38a
Drg Cog Self-Rated Health
.40 6.95 . 11 10.56d
Agreeableness -.23 -.42 . 15 7. 65a
Drg Aff Agreeableness -.43 -.41 . 09 8. 61d
Social Desirability
-.28 -.60 . 14 7 .23a
Filial Anxiety .28 .14 . 19 6.86b
Neuroticism .31 . 18 .23 6.66b
Self-Rated Health
.23 2.07 .27 6. 48a
aE < .05.
bE < .01. cp < .005. dE < .001
221
Table E-13
Multiple Regression Analysis of Behavioral. Cognitive and
Affective Symptom Salience for Depression Case Study
Dependent Measure
Independent Variable
Beta B R2 F
Dep Beh Self-Rated Health
.35 3 .61 .07
O CO
rH •
Agreeableness -.35 - . 39 . 17 8 . 87c
Dep Cog Agreeableness -.28 - .46 . 04
< CO o •
Self-Rated Health
.24 3 .63 . 08 4 .52a
Dep Aff H-LOC (Internal) -.32 - . 37 .07 7.23c
Agreeableness -.39 - .37 .17 9 . 05d
Self-Rated Health
.30 2 .61 .26 9.54c
aE < .05. bp < .01. cE < .005. dE < .001
222
Table E-14
Multiple Regression Analysis of Behavioral. Cognitive and
Affective Symptom Salience for the Normal Aging Case Study
Dependent Measure
Independent Variable
Beta B R2 F
Nag Beh Problem-Focused .24 . 14 .05 4.55a
- Coping
Nag Cog H-LOC (Chance) .30 .72 . 08 7 . 37b
Nag Aff Filial Anxiety .37 . 18 .09 8 .98d
Eff./Emotional .49 .11 . 17 8.93c
Eff./Problem -.31 -.10 .25 7 .18a
Expressive Support .24 .26 .21 7 . 89a
Note. Eff./Emotional = Effectiveness of Emotion-Focused Coping, Eff./Problem = Effectiveness of Problem-Focused Coping, H-LOC (Chance) = Health Locus of Control - Chance Factors.
an << nR ^ m c_ - nnK d E < .05. de < -01. CE < .005. < .001
223
Table E-15
Findings for Dependent Measures from Regression Analyses
for Active Caregivers
Dependent Measure
Males Males Females Females
Mean Std. Dev. Mean Std. Dev.
Prob. Focused (C) 63.50 9.19 77 .21 15.05
Prob. Focused (S) 66.33 8.47 89.47 19.17
Emot. Focused (C) 86.50 10.60 113.04 22.50
Emot. Focused (S) 90.33 17.84 136.11 25.92
Eff./Problem Focused (C)
75.50 2.12 76.95 16.06
Eff./Problem Focused (S)
75.66 10.42 82.22 21.90
Eff./Emotion Focused (C)
96. 00 14.14 112.30 22.74
Eff./Emotion Focused (S)
102.33 18.10 126.11 38.60
LOC-P.O. (C) 16.50 3.53 17.04 4.94
LOC-P.O. (S) 18.50 3.98 20.11 6.11
Age of Parti. (C) 48.50 3.53 46.73 7.30
Age of Parti. (S) 76.66 8.16 60.66 4.24
Neuroticism (C) 45.50 12.00 38.13 9.02
Neuroticism (S) 45.33 3.93 37.11 10. 32
Affect Balance (C) 45.00 1.41 41.87 8.41
Affect Balance (S) 46.33 4.45 40.44 11.82
Note. fC) = Child, rs^ Problem.
= Spouse, Emot. = Emotional, Prob. =
224
Table E-16
Findings for Dependent Measures from Regression Analyses
Note. Inst. = Institutionalization, Home = Home Care, Serv/Home = Seek Services for Home Care, Diag. = Seek Services For Initial Diagnosis, (S) = Spouse, (C) = Child.
226
Table E-18
T-Values Between Case Studies for Diagnoses Dependent
Measures
Dependent Measure
Alzheimer's Drug Toxicity
Depression Normal Aging
Normal Aging
Mean 2 . 1 2 a 2 . 2 5 ° 2 . 2 8 b 2 . 7 5 a , b , c
Std. Dev. 1 . 3 1 1 . 4 0 1 . 4 2 1 . 5 3
Depression
Mean 2 . 5 8 a , d , e 3 . 2 6 d 3 . 5 2 a 3 . 1 2 e
Std. Dev. 1 . 2 8 1 . 3 1 1 . 4 8 1 . 4 1
Alzheimer's
Mean 4 . 5 0 a , d ' e 2 . 5 5 a , b ' c 3 . 1 7 d ' c 3 . 2 0 e , b
Std. Dev. . 8 6 1 . 65 1 . 6 3 1 . 62
Drug Toxicity
Mean 1 . 6 5 a 3 . 8 3 a ' d ' e 1 . 68 d 1 . 6 8 e
Std. Dev. 1 . 1 0 1 . 7 1 1 . 3 0 1 . 5 5
Note. Means sharing the same superscript are statistically different from one another.
Multiple Regression Analysis with Diagnosis as Dependent
Measure
Dependent Measure
Independent Variable
Beta B R2 F
Depression Knowledge of Aging
. 2 7 . 2 0 . 1 8 5
to •
Self-Rated Health . 2 6 . 6 3 . 1 8 5 . 4 7 b
Filial Anxiety - . 2 5 - . 0 3 . 1 8 5 . 4 7 b
Alzheimer's Disease
Knowledge of Aging
. 2 9 . 0 5 . 1 4 6 . 2 5 a
Locus of Control-Powerful Others
- . 2 3 - . 0 3 . 1 4 6 . 2 5 b
aE < .05. "E < .01
228
Table E-20
Correlations Between Formal Service Use. Help From Others,
and Dependent Variables for Careaiver Group
Criterion Measure
Dependent Variables
Formal Service Use
Nag Beh Ac . 40b
Nag Cog Ac . 36a
Nag Beh . 43b
Nag Cog . 36a
Az Aff Ac . 45b
Az Beh . 33a
Problem-Focused Coping . 62b
Emotional-Focused Coping . 50b
Eff./ Problem Focused . 45b
Eff./ Emotion Focused . 51b
Knowledge of Alzheimer's Disease
_Q CO •
1
Health Locus of Control -Powerful Others
. 3 la
Supportive Others
Drg Cog Ac . 34a
Drg Aff Ac . 37a
Note. Az = Alzheimer's Case Study, Nag = Normal Aging Case Study, Drg = Drug Toxicity Case Study, Beh = Behavioral Symptoms, Cog = Cognitive Symptoms, Ac = Accuracy, Aff = Affective Symptoms.
ap < .05. bp < .01.
APPENDIX F
FIGURES
229
230
36
35
34
33
32
31
30
29
2B
27
26
25
C H I L D A C T I V E CARE G I V E R
SPOUSE A C T I V E CARE G I V E R
MALES FEMALES
Ficrure 1, Care by Kinship by Gender by Case Interaction: Cognitive Accuracy Scores for Depression case study.
*t - (3,213) p < .01
231
Hi QC < o ID 2
a o lJL if) III U > cr UJ t/)
< 2 O * 3
in uj LL 8 v UJ Ui in /
[/y
o A
MALE ACTIVE CAREGIVER
FEMALE ACTIVE CAREGIVER
A2 DRG DEP NAG
Figure 2. Care by Gender by Case Interaction: Seek Professional Services for Home Care.
t = (3,216) E < -05
REFERENCES
Abel, K., & Hayslip, B. (1987). Locus of control and retirement preparation. Journal of Gerontology. 42. 165-167.
Almkvist, 0., & Backman, L. (1993). Progression in Alzheimer's disease: Sequencing of neuropsychological decline. International Journal of Geriatric Psychiatry. 8, 755-763.
Archold, P. G. (1983). The impact of parent caring on Women. Family Relations. 32., 39-45.
American Psychiatric Association. (1980). Diagnostic and statistical manual of mental disorders-Revised (4th ed., rev.). Washington, DC: Author.
Baker, R. R. (1984). Attitudes of health care providers toward elderly patient's with normal aging and disease-related symptoms. The Gerontologlst. 24. 543-545.
Bandura, A. (1977). Self-Efficacy: Towards a unifying theory of behavior change. Psychological Review. 84. 191-215.
Bandura, A. (1986). Social foundations of thought and action: A Social Cognitive Theory. Engiewood Cliffs: Prentice Hall.
Barer, B. M., & Johnson, C. L. (1990). A critique of the caregiving literature. The Gerontologist. 30, 26-29.
Barrerra, M., Sandler, I.N., & Ramsay, T.B. (1981). Preliminary development of a scale of social support. American Journal of Community Psychology. 9. 435-447.
Biegel, D. E., Salis, E., & Schulz, R. (1991). Family caregiving with chronic illness. Newbury Park: Sage.
Billings, A., Moos, R. (1981). The role of coping responses and social resources in attenuating the stress of life events. Journal of Behavioral Medicine. 4, 139-157.
Birkel, R. C. (1987). Toward a social ecology of home-care households. Psychology and Aging. 2, 294-301.
232
233
Black, K. S., & Hughes, P. L. (1987). Alzheimer's disease: making the diagnosis. American Family Physician. 36, 196- 202.
Blaney, P. H. (1985). Stress and depression in adults: A critical review. In T. M. Field, P.M. McCabe, & N. Schniederman (Eds.), Stress and Coping. Hillsdale, N.J.: Earlbaum.
Bradburn, N. M. (1969). The structure of psychological well-being. Chicago: Aldine.
Braithwaite, V. (1992). Caregiving burden, making the concept scientifically useful and policy relevant. Research on Aging. 14(1), 3-27.
Brink, T. L., Curran, P., Dorr, M. L., Janson, E., McNulty,U., & Messina, M. (1985). Geriatric Depression Scale reliability: Order, examiner and reminiscence effects. Clinical Gerontology. 3., 57-59.
Brody, E. M., Hoffman, B. A., Kleban, M. H., & Schoonover,C. B. (1989). Caregiving daughters and their local siblings: Perceptions, strains, and interactions. The Gerontologist. 29, 529-538.
Brody, E. M., Johnsen, P., Fulcomer, M., & Lang, A. (1993). Women's changing roles and help to elderly parents: Attitudes of three generations of women. Journal of Gerontology. 38. 597-607.
Buckwalter, K. (1989). Applied services research: Clinical issues and directions. In E. Light & B. Lebowitz (Eds.), Alzheimer's disease treatment and family stress: Directions for research (pp. 434-457). Rockville, Maryland: National Institute of Mental Health.
Butler, R. N. (1982). Senile dementia: reversible and irreversible. The Counseling Psychologist. 12, 75-79.
Caplan, G. (1981). Mastery and stress: Psychosocial aspects. American Journal of Psychiatry., 138. 413-420.
Chenoweth, B., & Spencer, B. (1986). Dementia: The experience of family caregivers. The Gerontologist. 26, (3), 267-272.
Cicirelli, V. (1983). Adult childrens attachment and helping behavior to elderly parents: A path model. Journal of Marriage and the Family. 45. 815-825.
234
Cicirelli, V. (1988). A measure of filial anxiety regarding anticipated care of elderly parents. The Gerontoloaist. 28(4), 478-482.
Clipp, E. C., & George, L. K. (1990). Caregiver needs and patterns of social support. Journal of Gerontology; Social Sciences. 45.(31, 102-111.
Clipp, E. C., & George, L. K. (1993). Dementia and cancer: A comparison of spouse caregivers. The Gerontoloaist. 33(4), 534-541.
Coan, R. W. (1972). Measurable components of openness to experience. Journal of Clinical and Consulting Psychology. 39. 346-353.
Cohen, G. D. (1976) . Mental health services and the elderly: Needs and options. American Journal of Psychiatry. 133. 65-68.
Cohen, G. D., Gold, D., Shulman, K., Worthley, J., McDonald, G., & Wargon, M. (1993). Factors determining the decision to institutionalize dementing individuals: A prospective study. The Gerontologist. 33.(6) , 714-720.
Cohler, B. J., Grover, L., Borden, W., & Lazarus, L. (1989). Caring for family members with Alzheimer's Disease. In E. Light & B. D. Lebowitz (Eds.), Alzheimer's Disease, treatment and family stress: Directions for research (pp. 50-105). Rockville, Maryland: National Institute of Mental Health.
Colerick, E. J., & George, L. K. (1986). Predictors of Institutionalization among caregivers of patient's with Alzheimer's Disease. Journal of American Geriatrics Society. 23. 493-498.
Costa, P. T., & McCrae, R. R. (1978). Objective personality assessment. In M. Storandt, I.e. Siegler, & M.F. Elias (Eds.), The Clinical Psychology of Aging (pp. 119-143). New York: Plenum Press.
Costa, P.T., & McCrae, R.R. (1986). Cross sectional studies of personality in a national sample: Development and validation of survey measures. Psychology and Aging. 1̂ . 139-142.
Costa, P. T., & McCrae, R. R. (1980). Still stable after all these years: Personality as a key to some issues inadulthood and old age. In P.B. Baltes & O.G. Brim
235
(Eds.), Lifespan development and behavior (Vol. 3, pp. 65-102). New York: Academic Press.
Costa, P. T., & McCrae, R. R. (1988). Personality in adulthood: A six-year longitudinal study of self-reports and spouse ratings on the NEO personality inventory. Journal of Personality and Social Psychology. 54. 853-863.
Coyne, A. C. (1991). Information and referral service usage among caregivers for dementia patients. The Gerontoloaist. 31.(3). 384-388.
Crook, T. (1987). Dementia. In L. Carstensen & B. Edelstein (Eds.), Handbook of clinical gerontology (pp. 96-111). New York: Pergamon Press.
Crowne, D., & Marlowe, D. (1964). The approval motive. New York: Wiley Press.
Dieckmann, L., Zarit, S.H., Zarit, J.M., & Gatz, M. (1988).The Alzheimer's Disease Knowledge Test. The Gerontologist. 28.(3), 402-407.
Deimling, G. J., & Bass, D. M. (1986). Symptoms of mentalimpairment among elderly adults and their effects on family caregivers. Journal of Gerontology. 41(6), 778- 784.
Deimling, G. J., Bass, D. M., Townsend, A. L. , & Noelker, L. S. (in press). A comparison of spouse and adult-child caregivers in shared and separate households. Journal of Aging and Health.
Elsworth, R. B. (1965). A behavioral study of staff attitudes toward mental illness. Journal of Abnormal Psychology. 70. 194-200.
Fatheringham, J., Skeleton,M., & Hoddinott, B. (1972). The effects on the families of the presence of a mentally retarded child. Canadian Psychiatric Association Journal. 17. 283-289.
Fitzgerald, E. T. (1966). Measurement of openness to experience: A study of regression in the service of the ego. Journal of Personality and Social Psychology. 4. 655-663.
Folkman, S., Lazarus, R., Dunkel-Schetter, C., Delonges, A. & Gruen, R. (1986). Dynamics of a stressful encounter: Cognitive appraisal, coping and encounter outcomes.
236
Journal of Personality and Social Psychology. 50, 992-1003.
Ford, C.V., & Sbordone, R. J. (1980). Attitudes of Psychiatrists toward elderly patients. American Journal of Psychiatry. 137. 571-575.
Gallagher, D., & Thompson, L. (1983). Depression. In P. Lewinsohn & L. Teri (Eds.), Clinical gerontology (pp. 7-37). New York: Pergamon Press.
Gallagher, D., Wrabetz, A., Lovett, S., Del Mastro, S., & Rose," J. (1989). Depression and other negative affects on family caregivers. In E. Light B. D. Lebowitz (Eds.), Alzheimer's disease, treatment and family stress; Directions for research (pp. 218-266). Rockville, MD: National Institute of Mental Health.
Gatz, M., Bengtson, V. L., & Blum, M. J. (1990). Caregiving families. In K. W. Shaie & J. E. Birren (Eds.), Handbook of the psychology of aging (3rd ed.), (pp. 404-426). New York: Van Nostrand Reinhold.
George, L. K. (1981). Subjective Weil-Being: Conceptual and Methodological Issues. In C. Eisdorfer (Ed.), Annual review of gerontology and geriatrics. New York: Springer.
George, L. K., & Gwyther, L.P. (1986). Caregiver well-being: A multidimensional examination of family caregivers of demented adults. Gerontologist. 26. 253-259.
Gesten, E. L., & Jason, L. A. (1987). Social and community interventions. Annual Review of Psychology. 38. 427-460.
Gilligan, C. (1982). In a different voice. Cambridge, MA: Harvard University Press.
Green, V. L., & Monahan, D. J. (1987). The effect of aprofessionally guided caregiver support and education group on institutionalization of care receivers. The Gerontologist. 27. 716-724.
Gutman, D. (1987). Reclained powers: Toward a new psychology of women in later life. New York: Basic Books.
Gwyther, L. & George, L. (1986). Caregivers for dementia patients: Complex determinants of well-being and burden. The Gerontologist. 26. 245-247.
237
Haley, W. E., Levine, E. G., Brown, S. L., & Bartolucci, A. A. (1987a). Stress, appraisal, coping and social support as predictors of adaptation outcome among dementia caregivers. Psychology and Aging. 2^ 323-330.
Haley, W. E., Levine, E. G., Brown, S. L., Benny, J. W., & Hughes, G. H. (1987b). Psychological, social, and health consequences of caring for a relative with senile dementia. Journal of the American Geriatrics Society. 35. 405-411.
Haley, W. & Pardo, K. (1987, August). Relationship of stage of dementia to caregiver stress and coping. Paper presented at the annual convention of the American Psychological Association, New York, N.Y.
Hall, C. & Lindsay, G. (1985). Theories of personality (3rd Ed.). New York: Wiley Press.
Hamilton, M. A. (1960). A rating for depression. Journal of Neurology. Neurosurgery, and Psychiatry. 23, 56-62.
Harris, P. (1993). The misunderstood caregiver: A qualitative study of the male caregiver of Alzheimer's disease victims. The Gerontologist. 33.(4), 551-556.
Henderson, S., Bryne, D. G., & Duncan-Jones, P. (1981). Neurosis and the social environment. New York: Academic Press.
Hooker, K., Monahan, D., Shifren, K., & Hutchinson, C. (1992). Mental and physical health of spouse caregivers: The role of personality. Psychology and Aging. 7(3), 367-375.
Home, H., Lowe, J., & Murray, P. (1990, August). Anxiety of voung adults over expected caregiver role. Paper presented at the annual meeting of the American Psychological Association, Boston, Massachusetts.
Horowitz, A. (1985). Sons and daughters as caregivers to older parents: Differences in role performance and consequences. The Gerontologist. 25. 612-617.
Jenike, M. A. (1986). Alzheimer's disease: Clinical care and management. Psvchosomatics. 27(6), 407-416.
Johnson, C. (1983). Dyadic family relations and social support. Gerontologist. 23. 377-383.
238
Kafer R., Rakowski, W., Lachman, M., & Hickey, T. (1980). Aging opinion survey: a report on instrument development. International Journal of Aging and Human Development. 11. 319-333.
Kahn, R., Zarit, S., Hilbert, N., & Niederehe, G. (1975). Memory complaints and impairment in the aged: The effect of depression and altered brain function. Archives of General Psychiatry. 32. 1569-1573.
Katzman, R. (1986). Alzheimer's disease. New England Journal of Medicine. 2. 964-973.
Kinney, J., & Stephens, M. (1989). Hassles and uplifts of giving care to a family member with dementia. Psychology.and Aging. 4. 402-408.
Klemack, D. (1978). Comment: An examination of Palmore's Facts on Aging Quiz. The Gerontologist. 18. 403-406.
Klemack, D. L., Roff, L. L. , & Durand, R. M.. (1980). Who knows much about aging? Research on Aging. 2. 432-444.
Knight, B., Lutzky, S., & Macofsky-Urban, F„ (1993). A meta-analytic review of interventions for caregiver distress: Recommendations for future research. The Gerontologist. 33(2). 240-248.
Kogan, N. (1961). Attitudes toward old people. Journal of Abnormal and Social Psychology. 62. 616-622.
Koin, D. (1989). The effects of caregiver stress on physical health status. In E. Light & B. Lebowitz (Eds.), Alzheimer's disease and family stress: Directions for research (pp. 310-320). Rockville, Maryland: National Institute of Mental Health.
Krause, N. (1986). Social support, stress, and well-being among older adults. Journal of Gerontology. 41. 512-519.
Krause, N. (1987). Understanding the stress process: Linking social support with locus of control beliefs. Journal of Gerontology. 42.(6), 589-593.
Krizek-Karlin, N., & Bell, P. (1993). Impact on the caregiver: Dementing vs. non-dementing illnesses. Women and Aging. 236-241.
Kukel, W., & Larson, E. (1989). Distinguishing Alzheimer's disease from other dementias: Questionnaire responses of
239
close relatives and autopsy results. The Gerontologist, 37. 521-527.
LaRue, A., Watson, J., & Plotkin, D. (1992). Retrospective accounts of dementia symptoms: Are they reliable? Gerontoloqist. 32. 240-245.
LaRue, A., Watson, J., & Plotkin, D. (1993). First symptoms of dementia: A study of relative's reports. International Journal of Geriatric Psychiatry. 8. 239-245.
Larsen, R. (1992). Neuroticism and selective encoding and recall of symptoms: Evidence from a combined concurrent retrospective study. Journal of Personality and Social Psychology. 62. 480-488.
Lasoski, M. (1986). Reasons for low utilization of mental health services by the elderly. In T.L. Bunk (Ed.), Clinical Gerontology (pp.1-18). New York: Haworth Press.
Lawton, S. J., Brody, E., & Saperstein, A. (1989a). A controlled study of respite service for caregivers of Alzheimer's patients. The Gerontologist. 29. 8-16.
Lawton, M. P., Morton, H. K., Moss, M., Rovine, M., & Glicksman, A. (1989b). Measuring caregiving appraisal. Journal of Gerontology. 44(3), 61-71.
Lawton, M. P., Moss, M., Kleban, M. H., Glicksman, A., & Rovine, M. (1991). A two-factor model of caregiving appraisal and psychological well-being. Journal of Gerontology. 46(4), 181-189.
Lazarus, R., & Folkman, S . (1984). Coping and adaptation. In W. Gentry (Ed.), The handbook of behavioral medicine (pp. 282-325). New York: Guilford Press.
Levenson, H. (1973). Multidimensional Locus of Control in psychiatric patients. Journal of Consulting and Clinical Psychology. 41(3), 397-404.
Levenson, H. (1974). Multidimensional Locus of Control in prison inmates. Proceedings of the 82nd Annual Convention of the American Psychological Association Division of Personality and Social Psychology. 354-356.
Levin, E., Sinclair, I., & Gorbach, D. (1986). The effectiveness of the home help service with confused old people and their families. Research Policy Planning. 3. 1-7.
240
Levine, N., Dastoir, D., Gendron, C. (1983). Coping with dementia: A pilot study. Journal of American Geriatrics Society. 31. 12-18.
Liptzin, B., Grob, M. C., & Eisen, S. V. (1.988). Family burden of demented and depressed elderly psychiatric inpatients. Gerontoloaist. 28. 397-401.
Litman, T. (1974). The family as a basic unit in health and medical care: A social-behavioral overview. Social Science and Medicine. 8. 495-519.
Marsden, C. D., & Harrison, M. J. G. (1972). Outcome of investigation of patients with presenile dementia. British Medical Journal. 2. 249-252.
Martin, R., & Gutherie, R. (1988). Office evaluation of dementia. Dementia. 84.(3), 176-187.
McCrae, R. R., & Costa, P. T. (1983). Joint factors in selfreports and ratings: Neuroticism, extraversion, and openness to experience. Personality and Individual Differences. 4. 245-255.
McCrae, R. R., & Costa, P. T. (1984). Emerging lives. enduring dispositions: Personality in adulthood. Boston: Little Brown.
McCrae, R. R., & Costa, P. T. (1985). Updating Norman's "adequate taxonomy": Intelligence and personality dimensions in natural language and in questionnaires. Journal of Personality and Social Psychology. 49. 710-721.
McCrae, R. R., & Costa, P. T. (1990). Personality in adulthood. New York: Guilford Press.
McCrae, R. R., Costa, P. T., & Busch, C. (1986). Evaluating comprehensiveness in personality systems: The California Q-set and the five-factor model. Journal of Personality and Social Psychology. 54. 430- 446.
McCrae, R. R., Costa, P. T., Dahlstrom, W., Barefoot, J., Seigler, I., & Williams, R. (1989). A caution on the use of the MMPI K-scale correction in research on psychosomatic medicine. Psychosomatic Medicine. 51. 58-65.
McCubbin, H., & Patterson, J. (1982). Family adaptation to crisis. In H. McCubbin, A. Cauble, & J. Patterson
241
(Eds.)/ Family Stress. Coping and Social Support (pp.26-47). Springfield IL: Charles Thomas.
McFall, S., & Miller, B. H. (1992). Caregiver burden and nursing home admission of frail elderly persons. Journal of Gerontology. 47(2), 573-579.
McKinlay, J.B. (1980). Social network influences on morbid episodes and the career of help seeking. In L.L. Eisenberg & A. Kleinman (Eds.). The relevance of social science for medicine. Dordrecht, Netherlands: D. Reidel.
Miller, B. (1987). Gender and control among spouses of the cognitively impaired: A research note. Gerontoloqist. 28. 391-396.
Mittleman, M. S., Ferris, S. H., Stenberg, G., Shulman, E., Mackell, D., Ambinder, A., & Cohen, J. (1993). An intervention that delays institutionalization of Alzheimer's patients: Treatment of spouse caregivers. The Gerontoloqist. 33.(6), 730-740.
Montgomery, R. J. V., Gonyea, J. G., & Hooyman, N. R. (1985). Caregiving and the experience of subjective and objective burden. Family Relations. 34. 19-26.
Montgomery, R. J. V. , Kosloski, K., & Borgatta, E. (1989). The influence of cognitive impairment on service use and caregiver response. The Journal of Applied Social Sciences. 13(1), 360-368.
Morycz, R. K. (1985). Caregiving strain and the desire to institutionalize family members with Alzheimer's Disease. Research on Aging. 7(3), 329-361.
Neiderehe, G., & Fruge, E. (1984). Dementia and family dynamics: Clinical and research issues. Journal of Geriatric Psychiatry. 17. 21-56.
Newman, S. J., Struyk, R., Wright, P., & Rice, M. (1990). Overwhelming odds: Caregiving and the risk of institutionalization. Journal of Gerontology. 45(5), 173-183.
Novak, M. , Guest, C. (1989). Application of a multi-dimensional Caregiver Burden Inventory. The Gerontologist. 29(6) r 798-803.
Ory, M. G., Williams, T. F., Emr, M., Lebowitz, B., Rabins, P., Salloway, J., Sluss-Radbaugh. T., Wolff, E., & Zarit,
242
S. (1985). Families, informal supports, and Alzheimer's Disease: Current research and future agendas. Research on Ag±nS-«- 2(4) , 623-644.
Pagel, M. D., Becker, J., & Coppel, D. B. (1985). Loss of control, self blame, and depression: An investigation of spouse caregivers of Alzheimer's Disease patients. Journal of Abnormal Psychology. 94. 169-182.
Palmore, E. (1977). Facts on Aging: A short quiz. The Gerontolooist. 17. 315-320.
Palmore, E. (1980). The Facts on Aging Quiz: A review of the findings. The Gerontoloaist. 20. 669-673.
Palmore, E. (1981). The Facts on Aging Quiz: Part Two. The Gerontoloaist. 21. 431-437.
Pearlin, L. I., & Schooler, C. (1978). The structure of coping. Journal of Health and Social Behavior. 19. 12-21.
Pearlin, L. I., Turner, H., & Semple, S. (1989). Coping and the mediation of caregiver stress. In E. Light & B. D. Lebowitz (Eds.). Alzheimer's disease, treatment, and family stress (pp. 198-217). Rockville, Maryland: National Institute of Mental Health.
Pearlin, L. I., Mullan, J. T., Semple, S. J.., & Skaff, M. (1990). Caregiving and the stress process: An overview of concepts and their measures. The Gerontoloqist. 30(5), 583-594.
Piatt, S. (1985). Measuring the burden of psychiatric illnesses on the family: An evaluation of some rating scales. Psychological Medicine. 15. 383-393.
Pollitt, P. A., O'Conner, D. W., & Anderson, I. (1989). Mild dementia: Perceptions and problems. Aging and Society. 9_j_ 261-275.
Poulshock, S. W., & Deimling, G. T. (1984). Families caring for elders in residence: Issues in the measurement of Burden. Journal of Gerontology. 39(2), 230-239.
Pratt, C., Schmall, V. , Wright, S. & Cleveland, M. (1985). Burden and coping strategies of caregivers to Alzheimer's patients. Family Relations. 34. 27-33.
Pratt, C., Schmall, V., & Wright, S. (1986). Family care-givers and dementia. Social Casework. February, 1986
243
Pruchno, R. A., Blow, F., & Smyer, M. (1984). Life events and interdependent lives. Gerontoloqist. 27, 31-41.
Pruchno, R. A., Kleban, M., Michaels, J., & Dempsey, N. (1990). Mental and physical health of caregiving spouses: Development of a causal model. Journal of Gerontology. 45. 192-199.
Pruchno, R. A., Michaels, E., & Potashnik, S. (1990). Predictors of institutionalization among Alzheimer Disease victims with caregiving spouses. Journal of Gerontology. 45(6), 259-266.
Pruchno, R. A., & Resch, N. (1989). Aberrant behaviors and Alzheimer's disease: Mental health csffects on spouse caregivers. Journal of Gerontology. 44.(5) , 177- 182.
Quayhagen, M. P., & Quayhagen, M. (1988). Alzheimer's stress: Coping with the caregiving role. Gerontologist. 28. 391- 396.
Rabbins, P. V., Merchant, A., & Nestadt, G. (1984). Criteria for diagnosing reversible dementia caused by depression: Validation by two-year follow-up. British Journal of Psychiatry. 144. 488-492.
Rakowski, W., Barber, C., & Seelbach, W. (1983). Perceptions of parental health status and attitudes toward aging. Family Relations. 32. 93-99.
Reifler, B. V., Larson, E., Teri, L., & Poulson, M. (1986). Alzheimer's Disease and depression. Journal of American.Geriatrics Society. 32. 39-45.
Reifler, B. V., & Larson, E. (1989). Excess disability in dementia of the Alzheimer's type. In E. Light & B. D. Lebowitz (Eds.). Alzheimer's disease, treatment, and family stress (pp. 363-382). Rockville," Maryland: National Institute of Mental Health.
Reis, M., Gold, D., & Andres, D. (1990). Personality and other determinants of negative and positive outcomes of caregiving: A test of a model. Manuscript submitted for publication.
Reisberg, B. (1983). An overview of current concepts of Alzheimer's disease, senile dementia, and age associated cognitive decline. In B. Reisberg (Ed.). Alzheimer's disease (pp. 3-29). New York: Freeman Press.
244
Rivera, P., Rose, J., Futterman, A., Lovett, S., & Gallagher-Thompson, D. (1991). Dimensions of perceived social support in clinically depressed and nondepressed female caregivers. Psychology and Aging. 6(2). 232-237.
Robinson, B. (1983). Validation of a caregiver strain index. Journal of Gerontology. 38. 344-348.
Rotter, J. B. (1966). Generalized expectancies for internal versus external control of reinforcement. Psychological Monographs. 80. (1, Whole No. 609).
Ryckman, R. M. (1979). Perceived locus of control and task performance. In L. C. Perimuter & R. A. Monty (Eds.). Choice and Perceived Control. New Jersy: Erlbaum.
Sanford, J. (1975). Tolerance of debility in elderly dependents by supporters at home: Its significance for hospital practice. British Medical Journal. 3. 471-473.
Schulz, R., & Williamson, G. (1991). A 2-year longitudinal study of depression among Alzheimer's caregivers. Psychology and Aging. 6(4). 569-578.
Shanas, E., Townsend, P., Wedderburn, D., Friis, H., Milhoj, P., & Sughovwer, J. (1969). Old people in three industrial societies. New York: Atherton Press.
Sheikh, J. I., & Yesavage, J. A. (1986). Geriatric Depression Scale (GDS): Recent evidence and development of a shorter version. Clinical Gerontologist. 5, 165-173.
Sherer, M., & Maddux, J. E. (1982). The Self-Efficacy Scale: Construction and Validation. Psychological Reports. 51. 663-671.
Shifflett, P. A., & Blieszner, R. (1988). Stigma and Alzheimer's Disease: Behavioral consequences for support groups. The Journal of Applied Gerontology. 2(2), 147-160.
Shope, J., Holmes, S., Sharpe, P., Goodman, C., Izenson, S., Gilman, S., & Foster, N. (1993). Services for persons with dementia and their families: A survey of information and referral agencies in Michigan. The Gerontologist. 33.(4), 529-533.
Siegler, I., & George, L. (1983). The normal psychology of the aging male: Sex differences in coping and
245
perceptions of life events. Journal of Geriatric Psychiatry, 16. 197-209.
Smith, G. C., Smith, M. F., & Toseland, R. W. (1991). Problems identified by family caregivers in counseling. The Gerontoloaist. 31(1), 15-21.
Snyder, B., & Keefe, K. (1985). The unmet needs of family caregivers for frail and disabled adults. Social Work—in Health Care, 10. 1-14.
Stone, R., Cafferata, G. L., & Sangal, J. (1987). Caregivers of the frail elderly: A national profile. The Gerontoloaist. 27(5), 616-626.
Strauss, M. E., Pasupathi, M., & Chatterjee, A. (1993). Concordance between observers in descriptions of personality change in Alzheimer's disease. Psychology and Aaing. 8(4), 475-480.
Symer, M. (1980). The differential usage of service by impaired elderly. Journal of Gerontology, 35, 249-255.
Teri, L. Hughes, J. P. & Larson, E. B. (1990). Cognitive deterioration in Alzheimer's Disease: Behavioral and health factors. Journal of Gerontology. 4.5(2), 58-63.
Teri, L, & Reifler, B. (1987). Depression and dementia. In L. Carstensen, & B. Edelstein (Eds.), Handbook of clinical gerontology (pp. 112-122). New York: Pergamon Press.
Teri, K., & Wagner, A. (1992). Alzheimer's disease and depression. Journal of Consulting and Clinical Psychology. 60(3), 379-391.
Thai, L. J., & Grundman, M. (1986). Duration of Alzheimer's Disease predicts rate of dementia. Neurology. 36. 267-273.
Thompson, E., & Doll, W. (1982). The burden of families coping with the mentally ill: An invisible crisis. Family Relations. 31, 379-388.
Thompson, E., Futterman, A., Gallagher-Thompson, D., Rose, J., & Lovett, S. (1993). Social support and caregiving burden in family caregivers of frail elders. Journal of Gerontology. 48(5), 245-254.
246
Tobin, S. S., & Kulys, R. (1980). The family and services. In C. Eisdorfer (Ed.), Annual review of Gerontology and Geriatrics (pp. 370). New York: Springer.
Townsend, A.L. (1990). Nursing home care and family caregiver stress. In H. A. P. Stephens, J. H. Crowther, S. E. Hobfoll, & D. L. Tennenbaum (Eds.), Stress and coping in later life families. Washington, DC: Hemisphere.
Townsend, A. L., & Noelker, L. (1987). The impact on family relationships on perceived caregiving effectiveness. In T. Brobaker (Ed.), Aging health and family. Park, CA: Sage.
Troll, L. (1986). Parent-adult relations. In L. E. Troll (Ed.), Family issues in current gerontology. New York: Springer.
Veroff, J., Douvan, E., & Kulka, R. A. (1981a). The inner American: A self portrait from 1957 to 1976 New York: Basic Books.
Veroff, J., Douvan, E., & Kulka, R. A. (1981b). Mental health in America: Patterns of help seeking from 1957 to 1976. New York: Basic Books.
Vickio, A. W., & Cavanaugh, J. C. (1985). Relationships among death anxiety, attitudes toward aging, and experience with death in nursing home employees. Journal of Gerontology. 40. 347-349.
Vitaliano, P., Maiuro, R., Ochs, H., & Russo, J. (1989). A model of burden in caregivers of DAT patients. In E. Light & B. Lebowitz (Eds.), Alzheimer/s disease and family stress: Directions for research (pp.267-291). Rockville, Maryland: National Institute of Mental Health.
Wallston, K., & Wallston, B. (1978). Development of the Multidimensional Health Locus of Control Scales. Health Education Monographs. 6. 160-170.
Wan, T. (1986). Evaluation research in long term care. Research on Aging. 8. 559-585.
Ware, L. A., & Carper, M. (1982). Living with Alzheimer's Disease patients: Family stress and coping mechanisms. Psychotherapy. Theory. Research and Practice. 19(4), 472-481.
247
Weiler, P. G., Chiriboga, D. A., & Black, S. A. (1994). Comparison of mental status tests: Implications for Alzheimer's disease patients and their caregivers. Journal of Gerontology. 48(6), 44-51.
Wells, C. E. (1979). Psuedodementia. American Journal of Psychiatry. 36. 895-900.
Willianson, G. M., & Schultz, R. (1990). Relationship orientation, quality of prior relationship, and distress among caregivers of Alzheimer's patients. Psychology and Aging. 5(4), 502-509.
Wolfson, C., Handfield-Jones, R., Glass, K., McClaran, J., & Keyserlingk, E. (1993). Adult childrens' perceptions of their responsibility to provide care for dependent elderly parents. The Gerontologist. .33(3) , 315-323.
Wylie, C. (1984). Contrasts in the health of elderly men and women: An analysis of recent data for whites in the United States. Journal of Gerontology. 32. 670-675.
Yeatman, R., Bennetts, K., Allen, N., Ames, D., Flicker, L. & Waltrowicz, W. (1993). Is caring for elderly relatives with depression as stressful as caring for those with dementia? International Journal of Geriatric Psychiatry. 8. 339-342.
Yesavage, J., & Brink, T. L. (1983). Development and validation of a Geriatric Depression Screening Scale: A preliminary report. Journal of Psychiatric Research. 17, 37-49.
Young, R. F., & Kahana, E. (1989). Specifying caregiver: outcomes: Gender and relationship aspects of caregiving strain. The Gerontologist. 29(5), 660-666.
Zarit, S. H., Reever, K. E., & Bach-Peterson, J. (1980). Relatives of the impaired elderly: Correlates of feelings of burden. The Gerontologist. 20. 649-655.
Zarit, S. H., Todd, P. A., & Zarit, J. M. (1986). Subjective burden of husbands and wives as caregivers: longitudinal study. The Gerontologist. 26. 2 60-266.
Zarit, S. H., & Zarit, J. M. (1982). Families under stress: Interventions for caregivers of senile dementia patients. Psychotherapy: Theory. Research, and Practice. 19.(4) , 461-471.
248
Zarit, S. H., Todd, P. A., & Zarit, J. M. (1986). Subjective burden of husbands and wives as caregivers: A longitudinal study. The Gerontologist. 26, 260-266.
Zarit, S., & Toseland, R. (1989). Current and future direction in family caregiving research. The Gerontoloaist. 29. 481-483.
Zung, W. W. K. (1965). A self-rating depression scale. Archives of General Psychiatry. 12. 63-70.